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IPLEX

dustycat
0 Recommendations

I don’t know if Familia ALS really applies to what I have to say, but the other topics were not a fit at all. I am new to this website and to the ALS community. I am requesting help from anyone who is willing to show me the ropes. My good friend has ALS and I can not sit by and watch another friend die without doing something!!! I would first like to know the most recent info on the drug Iplex. Also, are there any trials being done now and can he sign up. His muscle degeneration is at 50% and today the doctor said 2 to 5 years to live. I cannot believe there is a drug out there that can help ALS, but unless one lives in Italy they are denied access. Are we aloud to exchange email addresses and phone numbers on this site?

Explore topics in this discussion:

Exercise ALS Physical therapy

12 replies

BirdmanTwo

Apparently IPLEX is not available per the following information.

http://www.als.net/forum/Default.aspx?g=posts&m=317218#31218

Sorry it's not what you wanted to hear, but DON'T GIVE UP!!!

CharlesHaleSrWife

I BURIED MY HUSBAND OF 25 YRS, 7 YRS AGO BECAUSE OF LOU GEHRIG'S DISEASE. MY ADVISE IS PRAY, PRAY OFTEN AND SHOW THAT FRIEND THAT YOU REALLY CARE. SO MANY TIME'S WE DON'T EVEN REALIZE, THAT THOSE THAT WE ARE TAKING CARE OF, WELL THEY ARE WATCHING EVERY MOVE WE TAKE BECAUSE THEY ARE SO GRATEFUL AND FILLED WITH LOVE BUT YET IT'S SO HARD FOR THEM TO SHOW IT. KEEP THE LOVE FLOWING AND MAYBE ONEDAY OUR LOVE FOR EACH OTHER WILL GET THAT CURE THAT WE NEED SO MUCH. GOD BLESS KATHY

purpleunicorn

my daddy was diagnosed with als on aug 21 2008, he had it longer it was just not diagnosed at the time...he now has to use a cane and foot brace, cant use his hands very much, has problems swallowing certain things, i am also tryin to find out information or do anything i can to help in the fight with als. we live in a very small town in southern arkansas and there is nothing around here for this..............God Bless all that are goin threw and helping with those with this disease........Please feel free to add me to your friends list............Toni

Suzycares

I'm wondering if there are ALS Chapters in surrounding states that might be able to help. What other states are close by where you live?

purpleunicorn

we live on the arkansas louisiana border......daddy is also being treated threw the VA.. but its a 3 hour drive just to see his doctors

managerie99

I know you can sign up for trials. I have heard from numerous ALS patients that the meds don't make a difference in life span or really assist to be worth spending the money on. It is my decision that we don't want the side affects nor the possible damage done to other organs. As far as I know there are no medicines yet that help. The best thing to do is make the best of it... don't overdo with exercise or physical therapy, and make the most of each day by doing all the things you always wanted to do... for as long as you can. Eat right. Quit smoking... things like that.

msgar1ginny

Hi I am so sorry about your friend. I cannot offer any help about the new drug but Please go to the site- patientslikeme.com. If you log in there you will see all the drugs and treatmenta our PALS are using. You should also get on living-with-als@yahoo.com. That site is the place that saved me when my husband was dxed. The site is for CALS-caregivers and PALS-persons with ALS and everyone that cares and loves PALS.

healALS

Sorry to hear about your friend. Try calling mayo clinic or Hopkins to see if they are doing any studies. They choose volunteers to be on studies with experimental devices and/or drugs. You might have to be persistent, although it will me worth it. Do some research as to go through the proper channels so your friend will know who to contact. Good luck!

intune

All the information about Iplex can be found here.

http://www.fda.gov/Drugs/ResourcesForYou/HealthProfessionals/ucm118117.htm

It is maddening, to say the least.

The gist of it is that Insmed, the company that makes Iplex is not making any more, does not plan any clinical trials, and is using the remaining supply for the 12 existing patients in the US and others in Italy only.

intune

One more link:

http://investor.insmed.com/releasedetail.cfm?ReleaseID=39059

intune

Okay, that last one seems not to work anymore. Try this one:

http://www.insmed.com/iplex.php

intune

Got it right this time:

http://investor.insmed.com/releasedetail.cfm?ReleaseID=399059

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